Living with moderate to severe renal failure from the perspective of patients

K. Schipper, W. E. van der Borg, J. de Jong-Camerik, T. A. Abma

Within healthcare, almost no attention is given to patients with moderate-to- severe chronic kidney disease, having a with GFR between 20 and 45 while the presumption exists that these patients already experience several problems in their lives during the course of their illness. A team of academic researchers and a renal patient participated in a qualitative study. Individual interviews (n = 31) and focus groups (10 participants in total) with patients having moderate-to-severe chronic kidney disease were conducted to gain insight into their everyday problems. Participants mentioned several experiences that can be divided into physical, social, societal and psychological aspects as well as aspects related to healthcare. The most important findings, following under each of these categories are: 1) the experience of fatigue (physical aspects) 2) the search for acknowledgment of complaints/not enough attention given to complaints leading to overcompensation and secrecy (societal aspects) 3) work problems (societal aspects) and 4) the wish to control the disease but not receiving enough support for this (healthcare). Patients feel in general that healthcare professionals do not take them seriously in their complaints and problems. This study offers important new insights into an expanding group of patients having moderate-to-severe chronic kidney disease. Healthcare professionals should acknowledge their problems instead of ignoring or rejecting them and they should support patients in finding a way to deal with them. The assumptions of Personalised Care Planning could be used to support patients.